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First I would like to extend heartfelt thanks to each and every one of you who replied with your thoughtful responses.  The responses were so varied that I am finding it difficult to summarize.  I will attempt because it seems there is just as much interest in the outcome of our situation from the list mates as we feel ourselves.

There seem to be many differing opinions about testing, symptoms etc., that I feel like I should share a few things that I have learned over the past year first.  First off, it is well documented that there are quite a few things other than celiac disease that cause flattened villi.  Parasitic infections, viral and bacterial infections, medication usage (especially aspirin or anti-inflammatories such as ibuprofen) to name just a few.  This list is readily available to us on many celiac websites such as celiac.com.  The last item applies to my husband's case.  He was taking ibuprofen around the clock, like candy after a motorcycle accident one year prior to his celiac diagnosis and the biopsy that showed villous flattening.  Villous flattening, no matter what the cause, will eventually cause malabsorption.  It does not have to be due to celiac disease.

Many of you suggested that surely there we some type of signs of celiac disease prior to the diagnosis.  In his case there we no symptoms.  No anemia, osteoporosis, malabsorption symptoms.  Labs were all good until the puncture of the colon.

I feel it is really important to warn everyone out there that colonoscopy is necessary and usually safe but please be selective in which doctor you choose to perform this procedure.  Since our ordeal, I can't tell you the number of cases I have been told about in which the outcome was not as good as ours.  I don't have the numbers regarding this, but I can tell you that, unfortunately, colon puncture during colonoscopy, resulting in sepsis and death are not as uncommon as you might think.   Some suggested that my husband's puncture was due to a diseased colon caused from celiac disease.  Everything that I have read or been told by the experts is that celiac disease is a disease of the small intestine.  We have pictures of the inside of my husband's colon taken during the colonoscopy that are unremarkable, showing a healthy colon, other than a couple of polyps. 95% of people with polyps never develop a problem.  A GI surgeon told us during this process that technique in taking a biopsy of those polyps is probably what caused the perforation.  He told us that occasionally, if not careful, the surgeon will "blow out" a polyp, causing the perforation.  Please read the small print on your consent forms prior to any procedure.  Colon perforation is a well-stated possible consequence of colonoscopy.  We just never though we'd be the unlucky ones.  

A good friend of mine, and ICU nurse of 20 years, also gave me some good advice.  She said that after working in the GI lab for ten years, assisting in thousands of colonoscopies, all doctors are definitely not created equally.  Her suggestion was, before letting any doctor perform this procedure, call the lab prior to scheduling and speak directly to the nurses to ask which doctor they would feel comfortable using.  She said that the nurses are often remarkably candid and will know exactly which doctors to steer you away from, confidentially, of course.  I wish I would have done this.  I will from now on. 

One or two of you suggested that we are "in denial" of this diagnosis.  Not at all.  We have been diligently following a gluten free diet for the last year and from that standpoint have no problem with it.  If he has celiac, he has celiac.  We have never really questioned the diagnosis until this question regarding possible bad lab results came up.  

Some have suggested that if the antibody levels were up he definitely has celiac disease.  Others have said that his condition at the time of blood draw might have made a difference.  Many suggested that the only way to know is to start eating gluten and get retested.  Others stated that in no way should he start eating gluten again and risk more damage.  

Many suggested gene testing.  Many also said that even having the genes is no guarantee you have the disease.   

A few more of you sent encouraging notes with best wishes and hopes that we have received the wrong diagnosis. 

When we decide which path to take, I will share with all of you the results.  Thanks again for all your help! 

Jackie in St. Louis

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